Supporting caregivers here and locally

Amymv

Hello, 

My mother was diagnosed with Alzheimer's 18 years ago and she passed away last June during the covid lockdown at her assisted living facility.  I miss her terribly and feel an emptiness.  I would like to fill this empty feeling by helping others. I would like to come here to offer encouragement for others walking this difficult road. 

I am also wondering if anyone has suggestions for me.  I would like to work as a caregiver/offer respite locally to those who have loved ones with Alzheimer's/dementia. My training is strictly from my mom, so I am not sure if people would be interested in my help. I would need to do this on a very part-time basis because I still have children at home and one is physically disabled. I picture helping so a caregiver can get out for a few hours to recharge once or twice a week.

So, if you could have help once in a while from someone with personal experience, but a willingness to learn, would you take it? I am wondering if I need to look into training/certification. Being paid is not a big issue here, but I am curious what a person would charge.  I am considering making this a part-time career and might be able to go back to school if it would make a difference. 

Thank you for any input you can give!

Amy

Marta

Dear Amy:  what a lovely idea.

You could volunteer for your local hospice to offer respite care.  I would snap you up in a minute.  I used hospice volunteers in my husband's final days so that I could get a bite to eat or go home and change my clothes.  They were immensely appreciated.

Many caregivers would say:  never again.  And here you are, ready to get back in the trenches.

Thank you.

glitterqueenscare

I think that is a wonderful idea, what a tribute to the love you have for your Mom! 

I am currently a caregiver for my Mom, previously I was also a caregiver for my Dad who passed away from dementia in 2015.  In both cases we had trouble finding help to supplement what we could provide in the home ourselves, we finally settled on local people who were recommended by word of mouth, previous experience meant more to us than licensing or work experience.

Sometimes this type of help makes the difference between allowing a caretaker to attend a child's graduation, run to the grocery or spend time with a spouse.  I have spent anywhere from $12-$25 per hour and cherished our helpers as members of our care team.

Local social workers, palliative docs, senior centers, etc. may also keep a running list of private caretakers looking for work that you may be able to put your name on.  People are always looking, good reliable help is very hard to find.  Good luck!

zauberflote

Amy, you are wonderful. There are great ideas here already. You could also do an internet search as though you wanted help, to see what offerings are out there. My city has an organization called "Seniors Helping Seniors", a very small franchise. I employed a team of three of these caregivers for a few hours a week for "non-me" companionship for Mom in MC. They were all experienced, and one of them was a retired RN! 

My dad died suddenly of cancer when Mom was 69, and she was so helped by hospice that she became a volunteer for a while. A member on here, ArmyVet, has done the same thing after his wife passed away. 

Iris L.

My suggestions to enhance and round out your valuable personal experiences: 

--take the Savvy Caregiver classes from your local Alzheimer's Association

--review the main books about AD, esp. The 36 Hour Day and Understanding the Dementia Experience online

--review Naomi Feil about validation

---watch Teepa Snow videos on Youtube.

Also continue to post on the message board.  Thank you for coming back!  

Iris L.

Amymv

Thank you all for your suggestions!  I will definitely look into these and it will be a good way to improve my knowledge.  I appreciate each of you for taking the time to respond!

Siniae

Amy you are truly a wonderful person my mom also diagnosed with Alzheimer's 

Mom was gone for 30 years lived in Minnesota long story short her partner said  it would be better if she went home to family its only two of us.

My brother lets just say no support 

I've had mom going on just over two years doing it all alone way to many emotions to even begin to express them.

I know its a battle I'll never win or mom

I cry for both of us just to let it out.

Reading so many messages for the first time tonight really made me feel that I am absolutely not alone in my feelings

Had to let it out

Thanks

sunnydove

Oh how I wish for someone just like you near me! I am the sole caregiver for Mom and have had to give up my career to care for her. It's very lonely and very restrictive. For example, I long to go to a thrift store (I need new clothes) or even just wander through a Ross or Marshalls to just look at stuff and smell the candles! But since there is a 4 hour minimum for most agencies, we are talking about $100 just to walk out the door. I can't afford that. Also, I'd think someone who has been through it is MORE qualified than lots of paid caregivers. Every person is different so no schooling is going to give you all the info you need for every situation. Someone like you who is in it because they care... that's what she needs in my absence. I looked on care.com hoping to find someone but I have found all the independent people charge MORE per hour than the agency. 

Some neighborhoods have support networks. Unfortunately for me the one here is pay to join. But you might check there first. Just to be there for someone like me who just needs an hour or two to catch their breath. Maybe even a local ALZ Association office could keep your name on file. 

Funny, as stressful as this job is, I have thought the same thing. I feel like if I could do it for someone else's loved one, I could do it without the personal devastation and be really good at it! 

Love and gratitude to you!

Momhelper0108

Hello, you wonderful caregivers - I do not have a formal diagnosis for mom who is 89 and currently in treatment for multiple myeloma (going well) but the mental confusion is there and has been worse the last few weeks. I am primary caregiver and my two sisters have been nowhere to be found with helping me with all of the doctors appts., making sure she has extra caregiving scheduled (she has long term insurance that assists in reimbursing here for that extra care -- so she arranged that well - thank you Mom); groceries in the house whatever is needed, I make sure it happens as organized and easily as possible. Yes, she still lives in her home about twenty minutes from me -- she stays at my house frequently especially when she has treatments or appts that I take her to. She seems to do better in her own surroundings... she has lived in that house for 50+ years. She has a small dog as companion, and I have security cameras up so I can check on her. I work full time.... thankfully, I work from home four days out of fives so that has greatly helped my sanity. 

Because I am the one that basically manages everything mother and I talked and decided that I should be the Executor of the Will and the POA should be updated to change from my sister to me so that I will have the authority if needed. I Estate attorney recommended by a friend who is an attorney - he came to my house and walked through the will and POA amendment (changed to make me Executor-Will and POA Agent - if I cannot or do not choose to fill either of those roles, the documents state the next sister - if that sister cannot or chooses not to fill that role it states the next sister. 

So, one of my sisters saw that mother wrote a check to an attorney and then started grilling mother on what was done with an attorney -- she was upset and confused and could not articulate what she signed - now there is a huge problem. My sisters are calling mother every day --- one is coming to town next week and I feel they will take her to another attorney and have the name change amendment on the Will and POA revoked which will put them back as Executor and POA Agent even though they have no interest and have shown little to no concern for her and certainly none for me as I try to help Mom.

I do not have anyone to talk with about this -as you can see my relationship with both of these sisters is non-existent - I really just want to be able to have the authority to continue helping mom while she is here (especially if she gets to where she cannot mentally help herself) and once she is gone I want to be able to carry out her wishes (she has already divided everything three ways -- there should be no issue there other than selling the home and contents - Mom laid it all out ten years ago)

I have been upset this week and mother has been quite stressed with my sisters calling and insisting she see an attorney......really there is nothing I can do to stop them from doing this and I am afraid they will scare her into thinking she is at risk and having her revoke it. I have the same rights as POA as the original that my sister had -- she does not want to help but she wants to retain control. It is a sad situation - cannot say I am shocked --  just one more disappointment. 

So that is a lot to get off my chest - thank you for reading. What really prompted me in writing was the lady that wanted to offer her support to others now that her parent is gone --- I will say and have told mother many times that the most important thing I do with my time are the things I do to help her -- to make her life as easy as possible at this stage.  I am not sure I could do this for someone else not my parent -- it is alot to take on and I agree with many of you who wrote that it is admirable -- and I can understand the place that it comes from... just not sure I could do it but was quite touched to read her desire to continue to make life easier for someone else. 

I have read that families can be a source of support but all I have are these two sisters who have never cared about anything other than making money and spending it on houses and things they do not need. They are so afraid of someone getting more than them. 

I am resigning myself to the realization that I cannot control this -- they will do what they will do, and I cannot stop them from getting mother and doing whatever they gang up on her to convince her to do --- it is sad but that is it. I need to find a way to let go of it -- I have done what I can to ensure I can continue to manage even if she is unable at some point -- I cannot do more than what I have done to ensure that -- if they undo it - what can I do?

I so admire everyone that takes this on ---